Hattie’s Story

In late May of 2024, our family was battling a flu bug.  On Saturday, May 25th, Hattie started having diarrhea, so I thought she had a milder form of the flu since the rest of the family was vomiting. By late Sunday, she seemed more herself and wasn’t having loose stools.  She had gone back to daycare and was being a normal three-year-old. 

When I picked her up from daycare on Wednesday, May 29th, she was very emotional.  She was not acting like herself and didn’t have an appetite.  I remember my husband letting her eat a cookie for supper just to get her to eat something.  It was an early night for her and I thought she just needed to sleep it off.  That night around 10:30 p.m. she woke me up to go to the bathroom. This is when she started having diarrhea every 10-15 minutes.  

Around midnight on May 30th, she started throwing up very dark bile, something that I have never seen before with any of my other three children.  It was around 4:30 a.m. when I started looking closer to check the stools and noticed blood.  This became very consistent every 10-15 minutes.  When the doctor’s office opened, I talked to her pediatrician and described the symptoms.  I was told to bring her to the acute care clinic. We left home immediately.  The doctor there was very thorough, but her labs didn’t show anything, so she took a stool sample and scheduled a follow up appointment the next morning. 

That night Hattie continued to decline, wouldn’t eat or drink. The once potty trained three-year-old was now going in her panties.  She appeared miserable and exhausted.  She had even asked to go back to the doctor, but at that time I really didn’t know what they could do. We had an appointment scheduled for first thing in the morning. 

The following morning, May 31st, we found out she had tested positive for Shiga toxin-producing E.coli (STEC).  Hattie was dehydrated so they said they would give her fluids before sending her home.  I remember talking to my husband and saying I wasn’t comfortable taking her home without more medical attention.  

An hour after getting the IV fluids, she went to the bathroom 10 times with bloody stools. The doctor decided that since it was the weekend she would admit her and provide “support care” with the IV fluids.  At the time, I didn’t feel they were taking her symptoms very seriously.  Hattie was in so much pain and losing a large amount of blood.  The following day I told the doctor my concerns and now she was also very puffy.  I was told it was normal and they could still see her joints. Talk about frustrating!

During our two-night stay, Hattie would not eat or drink.  She continued to have bloody stools every 10-15 minutes and I didn’t feel it was being tracked.  They were not keeping track of the number of diapers, the weight of the diapers or the amount of blood. On Sunday morning June 2nd, Hattie’s labs had drastically changed.  I requested to speak to the doctor as soon as possible and they agreed.  The doctor said she was developing Hemolytic Uremic Syndrome (HUS) and would need to be flown down to Sioux Falls Children’s Hospital.  This was the only hospital in South Dakota that could administer pediatric dialysis. This was a three-hour drive and we have three other children, so this was extremely difficult for our family. 

I had never heard of HUS prior to this, but in a very short timeframe I was educated and they requested we sign consent forms for her care.  This was extremely overwhelming.  Even though we trusted the medical care, some of the side effects and risks were too much to process.  We initially were told Hattie would be intubated for the first few days of continuous dialysis, but there was a miscommunication and she was awake after surgery.  This meant she would be awake, not able to get out of bed, eat or drink while she was receiving the dialysis. 

The doctor explained he was concerned about HUS affecting her brain. The Shiga toxin can attack the brain and some children have strokes and seizures.  It would be easier to monitor her brain while she was awake versus intubated.  It was heart wrenching to watch her be in so much pain. The pain medicine was not touching the level of pain she was experiencing. 

Our anxiety levels were so high.  There was so much discussion about the infection going to her brain and the continued clotting problems. The dialysis machine and central line catheter kept clotting.  They had to change out the machine and take her back into surgery to address the issue.  It was extremely nerve wracking!  

Due to Hattie’s blood clotting, she had troubles with her arterial line IV.  They would try to change and resituate it to work. This meant we were constantly holding her down so she couldn’t fight.  I hated seeing her like that.  I just wanted to show them the sweet, loving little girl she truly was. 

Hattie also had to have x-rays done three different times to address her extended and hard stomach. We were thankful each time to find out there was no blockage.  This was one less thing to worry about.

It was really exciting to watch Hattie’s kidneys start to wake up.  I don’t think I have ever been so excited to see urine in my life!  Despite positive progress, some days we would experience setbacks.  One big one was when she was showing signs of a UTI.  Unfortunately, they could not treat it with antibiotics because it could cause the HUS to flair back up.  I know it was the prayers and the grace of God that helped her recover from the UTI.  

As her kidneys started to show more progress she started doing hemodialysis.  This started with a one-hour session, progressing into two-to-four-hour sessions.  This was challenging because she would need to get all hooked up and new machines would be in her room. You could see the fear she had when medical staff with blue suits entered her room. 

Hattie had been throwing up since we were in the hospital. The doctors were being cautious about sending her home.  They were worried she would not receive enough fluids due to the continued vomiting.  We pushed back and insisted she be released from the hospital.  

On June 26th, after 21 days of being hospitalized, 14 days of dialysis, 3 blood transfusions, as well as platelet and plasma transfusions, Hattie was released from the hospital!  Once home, her nausea went away.  It was hard to believe we missed the whole month of June which is the nicest month in South Dakota.  Hattie was so excited to back home with her siblings, dog and all her toys.  It felt great to be home!

We continue with doctor’s visits and labs.  She is currently at stage 3 kidney disease.  Her recent urine tests showed she was passing too much protein, so they started her on a new medicine to see if this could help stabilize her kidneys.  The following month we will see an urologist for concerns about her bladder.  The months ahead will give us more insight on how her kidneys are doing and the lasting impact they will have due to developing HUS. 

One thing the doctors and nurses said would an issue is her feeling comfortable going back into the doctor’s office.  This has been extremely challenging.  As soon as we park, you can see her tense up and tell me, “No! no!”.  She has been through a medical trauma and it will take time for her to emotionally heal.  We have been trying to desensitize her at home by playing with doctor’s kits and using the home blood pressure cuff.  We also let her pretend she is the doctor or nurse and she examines us.  Hopefully with time, her anxiety around doctor’s visits will improve.